David Travis
is the Associate Dean of the College of Letters and Sciences at the University of Wisconsin-Whitewater. He studies weather and climate.

Jon Feucht
earned his Masters of Special Education Degree at the University of Wisconsin-Whitewater and is founding director of Authentic Voices of America, a summer camp for adolescents and young adults learning to use augmentative communication devices.

Most of the students in David Travis’s physical geography course were there to fulfill a general science elective requirement. Travis is a popular professor, known nationally for his work, and the small room in which he taught was filled to capacity. It was an intimate setting, and though Travis had had other students who used wheelchairs in his class before, as well as students with disabilities who didn’t use wheelchairs, Jon Feucht was clearly “the most severely disabled, from a physical appearance, student that [he] had ever had in a class.”

Almost immediately, Travis noticed the other students’ discomfort: they didn’t want to sit by Feucht. Besides his non-normative appearance, Feucht occasionally made guttural sounds, noticeably breathing and swallowing, with an occasional drool, which they found off-putting. The awkwardness left Travis at a loss.

*

Disability is a social enigma. Throughout history, people have felt compelled to stare at disabled people, then turn their heads in discomfort. Many consider Franklin Delano Roosevelt one of the greatest presidents of the United States, but he had to hide his polio-induced paralysis and use of a wheelchair, lest the public think him too weak to lead the free world. While the Hebrew Bible teaches “Thou shalt not curse the deaf nor put a stumbling block before the blind” (Leviticus), it also warns, “If you do not carefully follow His commands and decrees… the Lord will afflict you with madness, blindness, and confusion of mind” (Deuteronomy). And the institution of the “freak show,” which reached its heyday in the nineteenth century but lasted in the United States until the 1940s, featured people with disabilities, as well as tribal nonwhite “cannibals” and “savages,” displayed for public amusement and entertainment. As a social institution, the freak show helped reinforce onlookers’ sense of normality and superiority and helped construct disability as the ultimate form of deviance.

So it was that the rise of a medical approach to disability—what disability studies calls the medicalmodel—helped change this state of affairs. People with disabilities were deemed worthy of medical diagnosis, treatment, and benevolence. But benevolence may breed pity, and the pitied are still stigmatized as “less than.” Hence, the contemporary disability rights movement has advanced an alternative socialmodel of disability, believing that it is not an individual’s impairment, but rather the socially imposed barriers—inaccessible buildings, limited modes of communication and transportation, prejudicial attitudes—that construct disability as a subordinate social status, a devalued life experience. On the macrosocial level, this new model advocates policy reforms aimed at the institutional contexts of disability. On the microsocial level (social action that takes place in the local settings of daily life), it seeks strategies for undermining stereotypes and expanding people’s “personal comfort zone” with disability.Benevolence may breed pity, and the pitied are still stigmatized as “less than.” Hence, the disability rights movement has advanced a social model of disability that advocates policy reforms aimed at the institutional contexts of disability and seeks strategies to expand people’s “personal comfort zone” with disability.

Because of a sordid social history, though, disabled people are still often viewed in terms of a negative social type—as physical or cognitive deviants—that attributes a common symbolic meaning to many disparate individuals. In sociologist Erving Goffman’s terms, the stigma associated with disability is constituted by a “spoiled identity” whereby the person is “reduced in our minds from a whole and usual person to a tainted, discounted one.”

More generally, nondisabled people can find themselves uncomfortable, even fearful, around people with disabilities, as if the disabling condition might be contagious. Anthropologist Robert Murphy thinks they see disability as a “fearsome possibility.” In this way, “the disabled person becomes the Other—a living symbol of failure, frailty… a counterpoint to normality [and] a figure whose very humanity is questioned.”

According to psychologists Nancy Miller and Catharine Sammons, it is natural for people to notice others who look different. Indeed, they argue, the human brain is hard-wired to scan the environment and notice differences from the routine or expected average. “Everybody reacts to differences,” they write. “In the whole universe of differences, some attract us, some surprise or frighten us, and some aren’t important to us at all…. We often want to be open-minded and feel comfortable about other people’s differences but find that some unfamiliar differences make us feel tense and judgmental instead…. It can cause anxiety, uncertainty, and even a wish to avoid the other person.” However, Miller and Sammons think we can all learn to override these reactions.

Transforming Perceptions of Disability

Jon Feucht, from the start of this article, offers one such story of transformation. The setting was an undergraduate university course at the University of Wisconsin-Whitewater, and the story was recounted to Ron Berger. Feucht has a rather severe disability due to cerebral palsy. He uses a power wheelchair for mobility and has limited use of his hands, needing to rely on a paid caregiver to meet his daily needs of living. He cannot speak without use of an augmentative communication device that translates his typewritten commands into audio speech; it takes him about a minute to type 15-20 words.

Jon Feucht on vacation with his wife, Sarah.

Early in the semester, Feucht was not yet talking in class, but he did speak to Travis after class to ask questions. This is how Travis began familiarizing himself with Feucht’s manner of speech, learning to be patient as he completed his remarks and developing a rapport with his student. Feucht also came to Travis’s office hours to set up the accommodations he needed through the Center for Students with Disabilities, including an in-class note-taker and provisions for taking examinations.

The turning point in the class occurred during a story Travis was telling about chasing a tornado, one of his professional interests and personal avocations. He told the class he’d been driving with his infant daughter in the rear seat when a tornado warning came on the weather radio he kept in his vehicle. His wife was at work, and he thought about taking his daughter to her office before proceeding with his chase. But he didn’t want to wake her… so he decided to follow the tornado with his daughter in the car!

At this point, Feucht was frantically waving his arms. “Do you have a question?” Travis asked. Feucht was grinning, and the entire class waited to hear what he had to say as he carefully typed, then played his response: “I really feel sorry for your wife. How has she not left you by now?” The whole class broke out in laughter. At that moment, the other students finally recognized Feucht’s humanity, that he was attuned to everything Travis was saying and had the same reaction to the story as everyone else. Indeed, many of the other students had been shaking their heads in disbelief as if to say, “Are you kidding?” and “What kind of father are you?” What Feucht had inadvertently accomplished was what other ethnographies of social interaction have revealed: that people with disabilities are sometimes able to ward off a “spoiled identity” through intentional or unintentional impression management. That is, they may refuse assistance to demonstrate competency or use humor to make others feel comfortable, and they become “just another person.”

Prior to this epiphany, Travis had noticed that the students were asked to select a lab partner and work in pairs, but Feucht was working on his own (with his student aide who wrote down the results of Feucht’s lab work). Travis felt bad, but didn’t know how to remedy the problem. After the tornado story, though, the students all started interacting with Feucht. Feucht became more verbal in class, offering his opinions on topics from global warming to overpopulation. When Travis posed a question, Feucht was the first to raise his hand.

Interestingly, a new dilemma arose: with just 50 minutes available for each class, Travis had to be mindful of how much time he allocated to Feucht! So he decided to restrict Feucht to one question per class, with one follow-up to Travis’s response. Often, Feucht merely asked for a clarification, but he continued to make humorous observations as well, provoking the other students to laugh.

By mid-semester, the other students came to see Feucht as a witty and intelligent young man—someone who could help them with the course material. Travis recalls a lab in which a half dozen or more students were standing around Feucht talking to him and trying to understand how he got the answer to a particular lab assignment. Feucht was typing as fast as he could, with some verbal assistance from his student aide, and the other students were saying, “Oh, okay, yeah. That makes sense.” In many respects, Travis observed, Feucht had become one of the leaders in the class; the students seemed to have completely forgotten their discomfort. They even began helping Feucht with some of the fine-motor-skill physical work required to manipulate the lab instruments. Needless to say, Travis was delighted with this transformation.Ethnographies of social interaction have revealed that people with disabilities are sometimes able to ward off a “spoiled identity” through intentional or unintentional impression management—they become “just another person.”

Travis pointed out that this transformation happened only because of Feucht’s willingness to “put himself out there.” Travis had had other students in classes with less severe disabilities who were, nonetheless, shy and afraid to interact with nondisabled students. They seemed to want to blend into the background, trying not to be noticed. But Feucht wanted to make his presence known, in some ways forcing “his way into becoming an accepted part of the class.” But Travis, too, is to be given credit for skillfully negotiating a successful outcome to what was an initially challenging situation.

Interacting with Difference

Chairman of the Joint Chiefs of Staff Adm. Mike Mullen tests a robotic wheelchair prototype on a nationwide tour to discuss issues affecting today’s veterans, many of whom survive what would have been fatal injuries in the past and will benefit from high-tech devices. (U.S. Government Work.)

Miller and Sammons identify three general types of differences that provoke varied responses from observers in social interaction. Unfamiliar differences are those that are new to the observer, unexpected differences are those that are familiar to the observer but in a different context, and unsettling differences are those that are disturbing. In Feucht’s case, other students were likely to have seen someone with his level of disability before, but not necessarily in a close-knit classroom for four days a week. That this encounter with an unfamiliar or unexpected difference was unsettling for some, causing them to physically separate themselves in the classroom, is a lasting legacy of disability history. The disability rights movement notwithstanding, discomfort with disability penetrates our society’s collective conscious in subtle and not so subtle ways. At the same time, it is also likely that Travis’s physical geography students had never encountered an articulate individual using an augmentative communication device; once exposed to Feucht’s intelligence and wit, the differences that at first seemed unsettling seemed benign.

More generally, displacement of the fear of the Other may be just the first step in accomplishing desirable encounters with disability differences. As sociologists Spencer Cahill and Robin Eggleston found in their study of wheelchair users, much of the awkwardness of encounters between disabled and nondisabled people stems not from fear or malicious intent but from uncertainty. Should an able-bodied person, for example, offer assistance to someone who uses a wheelchair by opening a door for them or asking them if they need help retrieving something from a shelf, though that means putting themself at risk of rebuke for thinking that the wheelchair user is less competent than they are? In Travis’s case, should an instructor with an augmentative communication user in his class stop talking when he notices the student typing into his device, waiting for him to finish before moving on, or should he continue lecturing until the user is ready to speak? There is no standard protocol for these situations, but acknowledging the uncertainty seems a necessary precondition for satisfactory interactive outcomes.

In their research on the phenomenon of staring, cultural studies researchers Michael Lenney and Howard Sercombe shed light on this issue. They note that nondisabled people often feel a “conflict between the ‘desire to stare’ and the ‘desire not to stare’” at disability differences. On the one hand, it is impolite to stare. On the other hand, it is impolite to act as if the disabled person is invisible. Choosing to interact or not interact, then, “requires a complex level of communication, both visually and verbally.” Lenney and Sercombe suggest we all be mindful about what motivates us to engage or avoid those who appear different, with an eye toward understanding that interaction with those who are different is replete with possibilities for expanding our personal comfort zones. Thus, psychologist Carol Gill hopes not for the day when her disability will be deemed irrelevant, but when it will provoke “a respectful curiosity about what I have learned from my difference that I could teach” others. And journalist John Hockenberry wonders, “Why aren’t people with disabilities a source of reassurance to the general public that although life is unpredictable and circumstances may be unfavorable, versatility and adaptation are possible?”

Recommended Reading

Ronald J. Berger. Forthcoming 2013. Introducing Disability Studies. A comprehensive introduction to the field of disability studies from a sociological perspective.

Comments

People rarely like to go out of their comfort zones and often stick to what makes them feel most comfortable. They worry about what others would say if they did something out of the norm. That may be one of the primary reasons people mistreated Feucht at the beginning. People often do not know how to treat people with disabilities. Feeling bad for them and giving them a lot of sympathy is not always the right course to take. Mistreating them and ignoring them like they do not exist is also not the right course to take. There is a fine line between what is appropriate and what is not. However, people with disabilities are people just like us. To have to think through how to treat them stigmatizes them and makes them not seem normal. Every person has a lot to offer but we need to get out of our comfort zones and see what can be offered.

I enjoyed Ron’s insights
on overcoming discomfort. Indeed, they brought to mind two incidents of my
own in dealing with discomfort. Both go back a long ways, to the days when I, too, was a Professor at UW-Whitewater

In the late 70’s perhaps into the 80s I was teaching Marriage and the Family
in one of the classrooms we then used in the UW-W Library. It was a long
room, front to back, with staggered platforms for the seats. Thus it was
impossible for me to circulate freely in the class room. To pass out the
many handouts I used I had to count out several bunches of handouts and
hand one bunch to each of the persons seated up front in each row. They
would peel one off one handout for themselves and then hand the remainder to
the person in back of them. At the start of the semester I’m recalling, the
student who seated herself up front on the far left was obviously a victim
of the drug Thalidomide because she had no arms. Her hands were attached
directly to her shoulders. She drew lots of stares and whispers the first
day or two of class – the other students were clearly discomfited by her. I
asked myself, “What do I do with these handouts?”I never had to decide
because the student seated directly behind the disabled student stood up,
leaned over, and took the bunch of handouts for her row from me. She peeled
one off for the disabled student, one for herself, and passed the rest to
the person behind her. I was very pleased with the consideration shown to
the disabled student, until I realized she seemed to be upset. This situation
persisted for several days and I began to think I should intervene – but
wasn’t quite sure how. In the second week of classes, our fourth or fifth
meeting, I went to the left side of the room as usual to start passing out
another handout. The student sitting behind the disabled student stood up
and I gave the handouts to her, as had become almost customary. The disabled
student immediately stood up and said loudly “Gimmee those damn things!” and
grabbed them. She peeled one off for herself and passed the rest back to the
disconcerted student behind her. Everyone in the class noticed what had
happened: the disabled student had dramatically changed the collective
definition of the situation. She was no longer “disabled.” In fact, after I
had divided the class into discussion groups she became a leader in one of
them. Several students later remarked to me how that incident had changed
their views of what “disabled” meant to them.

A second incident involved my own disablement and reactions to it. Back in the early 90s I had vertebrae in my neck fused
because of two crushed disks. Fortunately the two operations took place in
the summers so I didn’t miss any classes either year. But I did start the
fall semesters with a neck brace – a sort of disfigurement, though I gave it
no thought and my students paid it no heed after I mentioned what had
happened to them on the first day of classes. Yet a faculty member from
another department took one look at me after the first operation, turned on
his heels and walked away. And he avoided me at all subsequent encounters
until the brace was removed! So apparently it doesn’t take much of a
difference to discomfit some people!

It is extremely difficult to step outside of your comfort zone and approach people who are different than you. People with disabilities – whether they are more noticeable or not – are people just the same. They deserve to be treated with respect. It’s encouraging to read about the story of Feucht and how those in his class were able to work with him after overcoming their original hesitation in approaching him. After realizing that he had similar thoughts and insights to them, Feucht’s classmates were able to look past the fact that he communicated differently than them and treated him like their other classmates. Hopefully we, as a society, can get to a point where we can do the same – looking past people’s disabilities and treating them as we would anyone else.

I’ve written a story about what my local county has done to my child who was born with a learning disorder – Nonverbal Learning Disorder – which is similar to Aspergers.

“A story to be shared and read by Social Workers all over the world.” — Comment by a Social Work site on FaceBook.

No More Secrets and Lies

A true story about the extreme measures taken by Blue Earth County in Minnesota and the State of Minnesota to separate a child with a mental disability from the only person who was able to help her — her father.